End stage of PSP

I'm sitting here with my Mom who is in her last days. She was first diagnosed with CBD 2 years ago then PSP 1 1/2 years ago. We first started seeing symptoms about 5 years ago. My stepdad died in March 2 from cancer & I had to put Mom in a nursing home on May 2 because she needed 24 hour care. Because of swallowing problems & choking, a pegtube was put in on April 26. A month later she was back in hospital because there was an abscess. On June 4 another one was put in. She was in & out of the hospital until end of October. My Dad died on Oct 9 from kidney failure. On Nov 1 I put Mom on Hospice. That was the best decision because I had more eyes watching her & they've helped me to be aware of what was happening. Just in the last 2 weeks Mom has steadily declined. The last year has been tough but I am glad that I can say that I did all I could do for them. I wish I would have found this site before now but maybe I can help someone else.

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  • How my heart hurts for you. My mum is in the final stages but has signed advance decision through solicitor she does not want to be tube fed when the times comes. My mum is only 68 and has had PSP for maybe 6 or 7 years. Her move to residential care was on her 65 th birthday as the falls she was having at home even with carers, were too often and horrendous, my dad passed away 2 years ago just before Christmas. I feel and understand your pain and hope your lovely mum passes peacefully from this incredibly cruel illness. My thoughts are with sweetie xxxx

  • i feel pain when read histories like me, i only can say to you, be strong, i know how you feel how you suffer, i dont seep well cause i take care of my father 24 hrs at day, i dont have care of hospices or similar because we dont have money to pay adn publics late too much, only i have to do its to aceppt it and be strong day by day....its to cruel, for them and fou us who care them....i hope tu case be pacefull and fast as possible...hugs from spain

  • Hi I have PSP and feel for you as carers,!

    I have a carer eho comes in to help me each day and give me rthe support I need

    .my partner is good but makes me realise what i CannOt do, not what I still can.

    My fault really as I get v weepy over nothing

    This is v frustrating as I am just getting over breast cancer and have to go 4 radiotherapy starting in a coupl eof weeks but it is great that the cancer is gone!

    Lol Jill

    :-)

  • Jillian,

    I can't tell you how much I admire and respect you. Your attitude is incredible, the hope you giver caregivers and other sufferers is immeasurable. Please take care of yourself and keep taking it a day at a time.

    Big Hugs

    DeeDee

  • My heart goes out to you. My Dad passed December 8, 2012 and the pain I feel each day is often unbearable, but as others said at least he is finally at peace. This is a horrendous illness which I hope and pray they find some way to treat (asking for a cure would probably be asking too much). Please don't doubt anything you've done. You have cared for her, loved her and taken care of her -- that is incredible. Please be strong and I will keep you and your mom in my heart and prayers.

  • HI DEE DEE

    I am so sorry you los t yoru dad i december

    i agree = - he is a tpeace

    i just hoep i can keeep blogging on this sit eto share and discover ways fwd

    lol JIll

    and dHUGS

  • I feel your pain too. My Dad had strokes and vascular dementia. Mum nursed him for 13 years and when I could see it was getting too much for mum I persuaded her to get him in to a nursing home as my sister and I could not be there enough even though I gave up full tome work to help out but he needed all night care in the end. Just after he went in mum started to have falls and lose her strength when coming downhill, became unable to cope with every day correspondence and struggled with her eyes. Over a 4 year period I took her to balance clinics and opticians trying to work out what was wrong with her and eventually I moved her into sheltered houing where she continued to develop more problems such as coughing on fluids micro writing and falling became dangerous, I asked her new GP if we could see a neurologist who straight away forecast that MRI and DaTscans would most likely reveal Parkinsons Plus Syndrome and he would be of the opinion that it was PSP as a likely cause because of her by then fixed gaze. Well one thing led to another and she deteriorated to the point where 4 carers a day, 2 lengthy visits from myself and one from my sister every day wasn't enough to stop her from falling and she had to go into care. 3 months and 28 more falls after going into residential care she had to be moved into the nursing wing as an infection robbed her of all movement for up to a month. She just had 6 good weeks before Christmas when this happened again and she now appears to be in end stage. She is fed up with fighting it now and I could see her giving up. She has refused a PEG or NG and I can't blame her. Her needs are fluctuating hourly and it looks as if this is how it will stay as it has been 3 weeks now with very little improvement, much choking and weakness.

    My sister and I are resigned to the cruelty of all this. We have decided to donate mum's brain at the end to try and help research and provide a cure one day.

    Best wishes to you and hope peace is with you .

  • blessed care giver,

    What grief you have had to bear over the past year. I pray that you will find strength for the year ahead. Do please keep coming back to this site, you will find friends here who have walked or are walking a similar path. The mutual support is so valuable.

    Take care & God bless

    h

  • Yes you definately can help those of us still struggling with PSP. One of the best things any of us caregivers can do is stay involved so that we can give tips and advice to those still in the struggle. Thanks!!

    jimandsharynp

  • You said it well...you did all you could. There is something peaceful and accepting in knowing that, and I think that's what all of us are striving for, really. We're just doing the best we can and sharing what we've learned along the way.

    Take care, RosemarieLynn

  • my prayers are with you you have been amazing you will be rewarded

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